A Photograph of me without me in it

A Photograph of me without me in it
A photograph of me without me in it

Monday, January 28, 2013


Years before neurosurgery, my new friend Rose and I were playing a friendly game of Scrabble. Because English is not Rose's first language and we had agreed that this would be a friendly game, I played my tiles casually, smugly believing that I would win the game without much effort.

Then Rose made a play that looked a lot like a block. I thought, "Lucky play." The next play she blocked me again. I seem to have forgotten that though Rose's first spoken language was Mandarin Chinese, her first rule of games was "Compete to Win."

I became less smug and more serious after that.

"One should never be smug" is a lesson that I have never learned, as I am often called to review it. If I were an old school teacher, I might punish myself by requiring me to write a whole page of "I should never be smug" in print.

A couple of weeks ago in yoga, I was again smug. Near the beginning of class, my teacher Victoria cautioned us to be gentle in our "first downward dog of the day."

"This may be the first downward dog for these other yogi yokels," I thought, "but I always do my private practice before I come to class." I felt superior, and smug.
Later in the class, Victoria repeated one of her mantras: "Be noticing what you are noticing." Because one my directions for reading poetry when I was teaching was, "Notice what you notice," and because I have written that yoga is body poetry, I was pleased with myself. "How wise I must have been," I thought smugly, as I did a yoga pat on my back with my left foot.

However, one should never be smug.

Thursday morning on Facebook, I read an Eleanor Roosevelt's quotation instructing me (yes, she meant it for me) on how to remain humble: "Do one thing every day that scares you."

So in yoga class on Friday when Victoria offered to help me rise into Warrior One, a pose that, since I've had neurosurgery, I only do with wall support. I thought of my friend Eleanor's quotation and said, "The thought terrifies me, but I'll try."

Victoria helped me rise into the pose, and for the first time in six years, I remembered what muscles to use in order to do this pose.

We might have left well enough alone, but Victoria helped me through Warrior Two, Triangle, and Reverse Triangle (three poses I do with wall support in my home practice) and finally into Moon Pose.

Moon pose? You've got to be kidding. One leg on the floor, one hand on the floor, the second leg raised parallel to the floor, the second hand and my gaze raised skyward, and my body twisted at my hips.

"You can do this," encouraged Victoria.

"Nope," I said, as I fell solidly to my bum and nearly pulled Victoria down with me.

I was glad to try these poses out of my comfort zone, and now I'm cured: Smug no more.

Monday, January 21, 2013

Good Lord, Show me the way!

As Sunday’s church service began, our choir surrounded the congregation and our friend Bruce sang the first lines of Alison Krauss’s soulful song, “As I went down to the river the pray, studyin’ about that good ol’ way….”

 The rest of the choir and the congregation, now familiar with the song, sang the rest, closing with the song’s final line: “Good Lord, Show me the way!”

I have been saying, not singing, “Good Lord, Show me the way!” all weekend.

Friday morning I attended the King County Bar Association’s Martin Luther King, Jr. luncheon. (No. I’m still not a lawyer. I crashed the party with a couple of my social work classmates and even our professor.)

The featured speaker, Michelle Alexander, wrote the book The New Jim Crow, a book that a friend had recommended to me and that our professor had assigned. Alexander argues that the current penal system and the War on Drugs that puts so many people—especially people of color—in prison, functions like Jim Crow did during Reconstruction.

 Alexander began noting that because King is dead, we have polished him to make him a gentler hero that he was. She quoted the poet Karl Wendell Hines, Jr. who said, “Dead men make convenient heroes” (1969), and she called us to recognize the brutality of our current system and to seek for a revolution, not just a reform, in our values: a revolution of values that Martin Luther King, Jr. was calling for at the end of his life.

Alexander said, “This message will not be popular, but it will be true. We have allowed a human rights nightmare to emerge on our watch: the mass incarceration of poor people of color. This is the moral equivalent of Jim Crow.”
She argued, convincingly, in her speech and in her book: “We have not so much changed the structure of a society that supported Jim Crow as we have changed the language we use to describe and enforce it.”

Her book is the only book I have ever read that I thought, “Every American who can read should read this book.”
Alexander said that in the years following MLK’s death, we could have chosen to follow his path or to abandon his dream. “I believe that in our imprisonment system, we have abandoned his dream.”

She asked, “So what do we do? Nothing short of a major awakening, a new movement, will change our current situation.”
Overwhelmed by the largeness of the problem and my own smallness, I thought, “Good Lord, Show me the way!”

After the presentation my classmate Ashley and I talked about what we had heard and how we felt. I felt small. I wondered how I will make a difference.
Then Saturday morning Ann and I attended a  feminist organization’s presentation, and in that presentation we heard the devastating effects of the recession on women, particularly women of color and other women living in poverty.
I wondered again how to make a difference, and I thought, “Good Lord, Show me the way!”
Saturday night, however, I began to feel hope when my previous colleague, Sean, visited. Sean teaches at Global Connections High School, a school dedicated to quality education in a poor part of town. Sean even teaches a class for students who seem quite smart but who are not succeeding in school, a class called “Empowerment.”

The Sunday morning after Sean’s visit, I arrived to a full sanctuary and to Bruce’s tenor singing, “As I went down to the river to pray.”
Then Pat Wright and The Total Experience Gospel choir, a choir of people of many races, sang out, “I woke up this morning with my mind…stayed on Jesus…” and we all sang, “Hal-le-lu, hal-le-lu, hal-le-lu-jah.”

Then we all stood for the singing of the Black National Anthem:

Lift ev'ry voice and sing,
'Til earth and heaven ring.
Ring with the harmonies of Liberty;
Let our rejoicing rise,
High as the list'ning skies,
Let it resound loud as the rolling sea.
Sing a song full of the faith that the dark past has taught us,
Sing a song full of the hope that the present has brought us;
Facing the rising sun of our new day begun,
Let us march on till victory is won.
"Yes," I thought. "Let us march on."

For the children’s message, George and Diana told their story of protest in the 1960s, a story of accompanying African-Americans to the beaches of Mississippi forbidden to black people. As the police shoved all of them into a dark paddy wagon, cramped like packaged hot-dogs, a voice sang out, “We shall overcome…” and this song of hope rang out from the dark, cramped paddy wagon.
Before starting her sermon, our minister Karla said, “Let’s sing ‘We Shall Overcome.’ Can we sing that?" and our congregation rose. We sang the song that means so much in our common struggle for justice:

We shall overcome, we shall overcome,
We shall overcome someday;
Oh, deep in my heart, I do believe,
We shall overcome someday.
The congregation stood and held hands, unusually kum-bah-yah for us, and Karla came to hold Pat Wright’s hand in a lovely duo: a black woman and a white woman singing their hopes for a more loving world.
So on this Martin Luther King, Jr. weekend, I have been called to a giant task and lifted in songs of hope.

In the sternness of self-evaluation and the hope of faith, the good Lord, I believe, will show me the way.











Friday, January 18, 2013

Why I Write

I am writing my second book, a book of interviews with people who have experienced life-changing health conditions and those in our lives.

(I am also writing several other books as I begin to look for an agent for my first book. As my Auntie Susie might say, “Go-o-o-o-lly! That’s a lot of books.")

The interviews that I’m conducting help me see that I am not alone. My experience is not unique, and others understand my perspective. I am interviewing my peeps.

In the fall, I interviewed a Salvadoran doctor who had experienced Guillain BarrĂ©, an auto immune disease.  In this disease, one’s immune system is triggered by one of many things, such as a virus, immunizations, or bacteria. In this case the immune system makes a mistake and starts to attack the person’s own peripheral nerves.  The illness starts in the toes or fingers, usually the toes, and moves up, including muscles in the chest so you can’t breathe. Because the nerves aren’t working, the muscles don’t work, and if it’s not treated immediately, a person’s lungs can stop working and the person can suffocate. With treatment, a person can recover almost completely. This doctor said that he was 99% cured.

 In our interview, he said, “I suspect, Mary, that though you’re interviewing me, you have gained new avenues of exploration in your own life. A patient can become a victim in the face of adversity. I suppose that this whole process for you is about finding meaning in your own life.

“Like Victor Frankl, a concentration camp survivor and psychiatrist, who wrote Man’s Search for Meaning, we can’t avoid suffering, but we can find or create some meaning to survive it and even thrive.”
I don’t actually think the good doctor’s right here: I’m not looking for meaning in my life. My life has meaning without me looking for it. I’m amazed by that meaning, and I want to celebrate with others.

The doctor’s question of why I write interests me more than his answer. Wednesday, in an interview with a new friend who has experienced chronic fatigue related to Fibro Myalgia, my friend asked, “Why do you write?”
Her question got me to thinking again.

At a writers’ retreat last year, a table of women explored a different question: how do you stay diligent, writing regularly? These women seemed to be distracted from their writing, and writing for them was to some extent a chore that required due diligence. I told them that my struggle is to make sure I live out the other facets of my life: my struggle is, at times, to not write. (This is not a split infinitive, so put away your red pen. Not writing is a verb, an action verb, just as writing is.)
I learned at that lunch that my answer did not make me popular with the crowd, so I have learned to keep this struggle to myself.

Still, writing for me is a kind of release and relief. It comes easily, like water from a tap. I feel compelled to write as I would feel compelled to breathe if I were drowning in water. Writing, for me, is like breathing under water.
Why? I think it’s because I have something to say, though I’m just noticing the recurring theme in my writing: life after disease is not tragic, though many people seem to think it is. I am not heroic because I aim to live a full life with my disabilities and my awareness that another tumor could grow at any time. Some people think I’m inspiring, and I like for people to think I’m inspiring, but the truth is that I’m not exceptional.

For the last year or so, I’ve been interviewing others with life-changing health conditions and those in our lives. I want to publish a book of these interviews, a book that I have wanted to read since my first diagnosis six years ago. I don’t want advice. I want to hear people’s stories, so I am writing a book of stories.
As I interview people with life-changing health conditions, with breast cancer, diabetes, addictions, mental illnesses and so forth, I see that my peeps live meaningful lives.

As my neighbor who has stage IV breast cancer said, “The treatments have been hell, but I’ve found out who my friends are and how much community I have. So there have been gifts. And I’ve found out that I can get through anything.
“It makes me sad when I meet people who can’t see the gifts. I wish I could have gotten here without this, but where I am and who I am are good because of everything I’ve learned from the experience of having cancer.”

Those of us whose lives that have been changed because of our health, live meaningful lives. That’s what I want anyone who’s diagnosed to know. That’s what I want everyone else to know.
Why do I want everyone to know this? Because most of us experience something we didn’t plan for as children, and though our paths change, we can live fully. In fact, perhaps many of us need to veer from the journeys we had planned in order to live fully.

I want everyone to know the hope that I’ve experienced as my life keeps veering from my planned paths. I don’t want people to fear their lives unfolding.
I want my writing to inspire hope. For everyone. Maybe that’s why I write.





Tuesday, January 15, 2013

Foreign Languages

My Mac has a cold and blacks out from time to time, so I took her to the Mac Genius Bar for a check-up today. (I wonder if those guys have a business card with "Genius" as their job title. That would be excellent!)

The nice genius who helped me explained what he was doing, and sometimes asked my permission to proceed. I had no idea what he was talking about, but I always looked earnest and nodded (my school days look.)

Yesterday in another incident of computer speak, I sat in the university's commons, across from a very cute, dimpled white boy who had Eagle Scout written all over him. He was tutoring a young woman sitting next to him who spoke with a strong Chinese accent, but as they were both speaking computer, they communicated effortlessly, it seemed.

"Is that in the documents folder?" she asked him.

He looked stymied. "There is no documents folder in Echo," he finally said. "Documents are Directories in Echo."

"Oooh," she said.

I thought, "I have no idea what they're talking about."

She asked, "Can you put the CV in the PT?" (Or something like that. I may the letters wrong since they were speaking Computer, a language foreign to me.)

He said, "In Shadow you can do that, but not in Echo."


I thought about the myth of Echo, the lovely nymph whom Zeus fancied and Hera punished by allowing her only to repeat what others said. I also guessed that these two, faces illuminated by their matching MacBook Airs, would not be interested in the story.

For today's appointment at the "Genius Bar", I awaited my genius, and as I waited, I wondered if it were intimidating to work under a big sign that says, "Genius Bar."

When I left my genius, I waited in the sun in front of Victoria's Secret and called a cab.

An older Sikh man with a long white beard, giant gold-rimmed glasses and a turban stepped out to help me into his cab. As we drove away, he asked with his strong Indian accent, "Victoria's Secret. What kind of shopping is that?"

I felt that I had to explain that I had not been shopping there and said, "I was not shopping there. It's a...store for women's undergarments."

He laughed and banged the steering wheel and said, "I saw a woman in no clothes [a mannequin, I'm guessing] , and I thought to myself, 'What kind of store must that be?'"

We both laughed and talked about where we are from, and he asked, "Are you here with your husband?"

"No," I said, "No husband."

"Oh, I am sorry," he said.

"I'm not," I replied more quickly than I intended to. "I don't want a husband."

"We are human, and we are meant to be loved," he said. "Man, woman, it doesn't matter. I believe that's what God thinks."

"Yes," I thought, "in this we both speak Seattlese."

Tuesday, January 8, 2013

Another Good Reason to Go to Church

For me, there are a lot of good reasons to go to church. Ann and I are supported as a couple. We see long time friends and make new ones. We interact with people much older and much younger than we are. We reflect on the meanings of God and love and justice, and we recommit ourselves to that work in the world. We notice grace in our lives.

We’ve been involved for over a decade with building relationships with people in a community in rural El Salvador. The relationship has helped us learn about our own country and about people living in another country, and it has provided witness for us of the hope of God’s love in times of war, torture and death. The community has taught us about resurrection as we have witnessed their passion for justice and kindness growing out of the cruelties of war and displacement.

Sunday, yet another good reason to go to church occurred to me. It’s so obvious that I’m surprised I’ve never thought of it before: vocabulary.

During the children’s sermon, Deborah talked with a floor full of kids aged one to ten. She talked about “epiphany,” and asked, “Does anyone know what that means?” When no kid answered, she opened the question to the adults, and Sue, who sits in front of us every week, gave James Joyce’s secular definition, “A moment of profound insight.”

Deborah nodded and provided a more Christian definition, as if she memorized it from the free online dictionary: “A Christian feast celebrating the manifestation of the divine nature of Jesus to the Gentiles as represented by the Magi.”

Then Deborah went on with her Children’s sermon/vocabulary lesson: “We’re not sure who the magi were. Maybe they were astronomers. Maybe they were kings. We do know that they brought gold, frankincense and myrrh.

“We know what gold was. That’s like money. Frankincense was something that smelled good, like a stick-up.”

Ann whispered to me from our grown-up pew that this was new vocabulary for her, too. “I thought a stick-up was what happened when a person with a gun went into a bank.”

I helped her out, “This stick-up is an air freshener.”


Deborah continued her lesson: “Does anybody know what myrrh is?" Nobody did, so she answered her own question, "They got it out of trees, kind of like maple syrup, and it smelled good. It was used as a balm. Does anybody know what balm is?...”

Then they prayed, and the kids returned to their parents or out with a guy named Oz (for real), and Karla started her sermon for the grown-ups. She started by talking about reprobates.

“Reprobates,” I thought. “Good word. I wonder if any of the teenagers who have to take their SATs are paying attention today.”

The unstated lesson: Go to church. You’ll improve your vocabulary. Indubitably.

Wednesday, January 2, 2013

Silver and Gold

New Year’s Eve, Chancey visited. She was a high school junior in an American class that I taught twelve years ago, and now she lives in Minnesota, but I get to see her when she comes to Seattle once or twice a year.

Chancey was a strong student in high school, but it was her spirit that I always appreciated the most. She was committed to learning in that way that geeks like I am are, and she seemed relaxed about grades in a way that I admired.

When Chancey was a junior, students turned in their first essays, essays analyzing The Scarlett Letter, in the fall, and Chancey’s essay wasn’t as strong as she wanted it to be, so throughout the year, we had paper conferences, and she rewrote that essay over and over. “I need to learn to write,” she said. She received no academic credit for all of this rewriting, but lots of credit in the teachers’ grade book in heaven. (There is no teacher’s grade book in hell. Who would use it? The teachers are in heaven.)

At the year’s end, students took oral exams in which they did an oral explication of a poem that they had seen before (and they had seen a lot of poems.) Students drew a number, and the number correlated with the number on the poem that the student was to explicate.

Chancey selected Emily Dickinson’s “Safe in their Alabaster Chambers.” She talked for a few minutes, and it became quickly clear that she didn’t know what “alabaster” meant, and she had no idea what the “alabaster chambers” might be. After a few minutes, she stopped talking and started laughing. “I have no idea what I’m talking about, do I?”

No. She did not. But she knew that laughter was the right response in this situation.

She maintains that light spirit as an adult who has been through some hard times personally and set for herself new dreams: she is starting a charter school for students in a low income area in the fall, and she has been researching curriculum and applying for grants for over a year now. Starting a school is no small feat, but with her she’s carrying her kindness, her smarts, and her perspective on what’s important, and I know she’ll make an important difference to students and parents.

I have been lucky that some students like Chancey and some friends have stayed the long course with me.

My friend Rose and I, for example, became friends when we were both married, without children, and in our twenties. Over the last twenty years, we’ve traveled together through two divorces (mine and hers), one coming out (mine), two children (hers), two brain tumors (mine), two bouts with breast cancer (hers), one Methodist church (hers and mine), one conversion to Judaism (hers), several new careers for each of us, and many celebrations of birthdays and solstices.

In my life, Rose is gold.

I am so lucky to have friends and students who travel with me along this windy road with so many recalculations. Many of you read my blog, so I want to say here that your presence in my life gives me the kind of confidence and sense of humor that my student Chancey somehow had as a teenager. Like the family I was born into, your spirit inspires and holds me in this life. You mean so much to me.

Some students and friends, however, have drifted from my life. I remember one student coming back to see me after she graduated. She asked for my address and said to me, “When I write, you’d better write back. Because once I’m in your life, I’m there forever. I’m very loyal, and you need to be, too.” I never heard from her again.

As Brownies, we sang the song:

Make new friends,

But keep the old.

One is silver,

And the other, gold.

As a child, I sang this song and recognized that the old friends are the gold ones. I also recognized from a young age that some friendships are for a time and place and do not carry on. I worried that if this were to happen, this would mean that I never really had friends at all: I worried that these short-time friends were like counterfeit gold, of very little value and insulting in their shininess.

Some friends and students others stepped away for a time and have then rejoined me. At those times, I am like the father in the story of the prodigal son: I am delighted that what I thought had been lost was found.

As I look back from my middle age, I think that those short-time and boomerang friendships were for their time and place and were important along that stretch of the journey.

For all of these people along my journey, I feel thankful. This is the spirit of this New Year for me: a spirit of gratitude.

Happy New Year! And thanks.